Experiences and needs of people with haematological cancers during the COVID‐19 pandemic: A qualitative study

Abstract Objective Haematological cancer patients are particularly vulnerable to the effects of COVID‐19. In addition to being immunocompromised, pandemic‐related travel restrictions have impacted access to treatments and overseas stem cell donations for patients requiring transplantation. Given this vulnerability, people with haematological cancers are at risk of experiencing heightened distress during the pandemic. This study aimed to explore haematological cancer patients' experiences and needs. Methods Twenty‐four Australian haematological cancer patients completed semi‐structured interviews exploring their concerns and worries during the pandemic, impact of pandemic on management of disease, access to information and support, lifestyle changes, and attitudes towards emerging models of healthcare during the pandemic. Interview transcripts were thematically analysed. Results Four themes reflecting the experiences of haematological cancer patients during the pandemic were identified: ‘Fears about contracting COVID‐19' (behaviour changes to protect health, impact on daily routine and habits, annoyance at dismissive attitude of others toward COVID‐19); ‘Reduced sense of connection and support’ (reduced social support and access to external support services); ‘New challenges’ (increased financial hardship, worsened health), and; ‘Underlying system and communication issues' (access to trusted information, satisfaction/dissatisfaction with care, navigating telehealth). Participants expressed a need for improved access to support services and trusted information. Conclusions The findings emphasise the additional challenges experienced by haematological cancer patients during the COVID‐19 pandemic and their impact on daily life. Results point to the importance of validation of increased distress during periods of uncertainty; reinforcing recommendations about high‐quality sources of information; and facilitating access to support services when face‐to‐face care is limited.


| BACKGROUND
Haematological cancers are a unique and heterogenous group of diseases that require specialised attention and care. 1 Despite some similarities between patients diagnosed with these diseases and solid cancers, treatment regimens for haematological cancers are comparatively long, aggressive, and require ongoing maintenance. Furthermore, the highly immunosuppressive status induced by these treatments and the diseases itself necessitates precautions, such as self-isolation, to minimise risk of acquiring infections that can cause life-threatening complications. 2 During the COVID-19 pandemic, the challenges faced by people with haematological cancers have both been illuminated and exacerbated. 3 The increased vulnerability to infections and viruses among those with haematological cancers has caused significant concern about a heightened risk of COVID-19 related morbidity and mortality, and the available data seem to support these concerns. A recent meta-analysis comprising 3377 patients from three continents reported a mortality risk of 34% among adults with haematological cancer and COVID-19. 4 This figure is substantially higher than the mortality rate reported in patients with solid cancers (25%), 5 emphasising the vulnerability of this subgroup and the importance of engagement in behavioural strategies that limit risk of infection (e.g., physical distancing, enhanced hygiene practices).
Access to treatments and overseas stem cell donations is another challenge faced by haematological cancer patients during the COVID-19 pandemic. In Australia, more than 80% of haematological cancer patients requiring haematopoietic stem cell transplantation (HSCT) receive stem cells from international volunteer donors. 6 Travel restrictions during the pandemic have reduced access to overseas donors, creating significant logistical challenges and psychological distress for those planned to undergo HSCT. 7 A growing body of literature attests to the negative psychological impacts of the COVID-19 pandemic on people living with cancer, including increased fear of disease progression, anxiety, and depression. [8][9][10][11] Qualitative findings suggest that the challenges created by the pandemic (e.g., treatment interruptions, fears of contracting COVID-19, reduced access to support from healthcare providers and family, and financial hardship) have contributed to heightened distress among cancer patients. 10,12 There have also been growing concerns about observed reductions in the number of cancer patients accessing care during the pandemic. [13][14][15][16] The precise reasons for this are unclear but may relate to patients' fear of acquiring COVID-19 in a clinical setting, limited capacity to use telehealth tools, and concerns about wasting the clinician's time. 17,18 The consequences of delays in accessing care may be far reaching.
Understanding the psychological impact of the pandemic can help inform the development of new models of care that address concerns and unmet needs during and beyond this pandemic. While existing literature highlights the psychological concerns of patients with solid cancers during the pandemic, given the unique challenges and needs faced by people with haematological cancers, more focused, in-depth studies are needed to identify the unmet psychological and supportive care needs in this population. In-depth understanding of these needs in haematological cancer patients has the potential to inform the delivery of optimal care for this patient group.
Accordingly, this study aimed to advance understanding of haematological cancer patients' experiences, concerns, and unmet needs during the COVID-19 pandemic.

| Participants and recruitment
Eligible participants were adults aged ≥18 years who currently have, or previously had, a confirmed diagnosis of haematological cancer and had sufficient English language skills to participate without an interpreter. Participants who resided outside of Australia were excluded. Participants responded to a study advertisement distrib-  19 (score ≥30 on the Kessler 10) and low levels of distress (score ≤20 on the Kessler 10). Purposively selected participants were contacted by researchers NZ and EY via email to schedule an interview. Of the 40 participants emailed, 24 chose to participate, representing a response rate of 60%. Verbal and written informed consent were obtained prior to the interviews. In line with Braun and Clarke's reflexive thematic analysis approach, 20 data saturation was not the intention of recruitment and analysis. Rather, the intention was to broadly and meaningfully explore patient experiences and care needs.

| Data collection
Interviews were conducted by authors NZ and EY (who both hold PhDs in psycho-oncology and are trained in qualitative research methods) between August and November 2020. A semi-structured interview guide was used (see Table S1 Topics covered by the questions included experiences during the pandemic, impact of the pandemic on management of disease, perceived adequacy of information and support, lifestyle changes, and perceived benefits and challenges of using telehealth tools. Interviews took place via telephone and were on average 29 min in length (range 18-49).

| Data analysis
Interviews were audio-recorded using a voice recording device and transcribed verbatim. Reflexive thematic analysis of the transcripts was guided by Braun and Clarke's six-stage method. 20,22 All transcribed interviews were read and checked against the original recordings to ensure accuracy and familiarisation with the content (step one). To prevent potential analysis bias, the primary coder (MM) was blinded to the distress level of the participants. Familiarisation and initial coding of a subset of the transcripts was conducted by authors MM and NZ. The authors (MM, NZ) independently coded the data and met to determine whether they agreed with the codes identified. After discrepancies were resolved through discussion and consensus was achieved, coding on remaining transcripts was performed by MM (step two), and codes were categorised 'patient experiences' and 'system and communication issues' (step three). These categories were then refined into themes and formally defined (steps four and five) and subsequently summarised with extracts from the transcripts (step six).

| Sample characteristics
A total of 24 haematological cancer patients, with a median age of 57 years (range 38-81) completed interviews between August and November 2020; 46% had high levels of psychological distress (score ≥30 on the Kessler 10 19 ). The ratio of men to women was even (50%) and most were married (79%). The most frequently reported haematological cancers were Leukaemia (37%), Lymphoma (25%), and Myeloma (21%). Further sample details are reported in Table 1.

| Overview of themes
Analysis of the qualitative data resulted in four overarching themes: "Fears about contracting COVID-19", "Sense of connection", "New challenges", and "System and communication issues". Each theme contained sub-themes. Illustrative quotes are presented in text.

| Behaviour changes to protect health
The fear of contracting COVID-19 and the life-threatening impact it would have on their health was pervasive for participants, leading to feelings of anxiety, acute fear, and distress.
� 'I was pretty fearful of dying actually, that was, I think that's the bottom line… I had a couple of days where it definitely, um, linked back into when I was first diagnosed. Um, and the fear level was, was similar and I had a little bit of a, what I call a meltdown.' (P13, Lymphoma, treatment ongoing) Participants reported self-implemented behaviour changes such as wearing masks and gloves, working from home, keeping children at home, washing hands, and disinfecting household items. These were all attempts to protect their health and to cope with the fear associated with COVID-19.

| Impact on daily routine and habits
Many participants described the impact of the physical distancing measures on their daily routines and habits. This ranged from avoidance of routine habits such as grocery shopping and commuting on public transport to the cancellation of social events. Some participants also noted consuming more alcohol and eating more than usual since the COVID-19 outbreak, which they attributed to spending more time at home. Participants expressed profound disappointment over reduced opportunities for physical activity.
� 'I've always done best exercising in a group setting and we lost access to that as well. So it was quite hard to um, keep up that motivation and that sort of exercise while we were locked down.' (P9, Leukaemia, treatment ongoing) � 'Um, but, I, my vice has been food, so I've put on 10 kilos. Um, because, you know, I've tried to occupy myself. I haven't been able to go out or, you know, just…' (P7, Leukaemia, treatment ongoing)

| Annoyance at dismissive attitudes of others toward COVID-19
Many expressed their annoyance towards those who they viewed as not taking the pandemic seriously. Participants described their disappointment toward others, including family members, friends, and members of the general public, who did not take precautions to help protect vulnerable immunocompromised persons.
� 'It's very frustrating, because we've got a beautiful big family, they just didn't self-isolate, ever… Even when they were supposed to, because, oh its family, we love each other, we can't spread it.' (P7, Leukaemia, treatment ongoing)     The long-term financial impacts of the pandemic on people with cancer are unclear and pose a risk of exacerbating distress which can lead to more serious problems, including depression, anxiety, and discontinued cancer care. 32,33 Further research with quantitative designs are needed to identify high-risk subgroups who may benefit most from referral to targeted and freely available interventions, in order to mitigate the longer-term financial impacts of the pandemic.

| STUDY LIMITATIONS
First, an eligibility requirement that participants have sufficient English language skills is likely to have prevented the participation of individuals from culturally and linguistically diverse (CALD) backgrounds. Future research considering the needs of CALD individuals is critical. This is particularly important given the rapid uptake of telehealth consultations, which may be less suited to CALD patients and can exacerbate inequalities in cancer care. 6,34 Second, the experiences of participants who had not yet started active treatment were under-represented in our sample. Further consideration of their unique experiences is important, particularly in light of the reported delays in accessing cancer care. 16